Since we’re still stuck in the hospital in somewhat of a holding pattern, waiting for the surgery date to arrive, I’ve been doing a lot of daydreaming and plotting. Naturally, inspired by the new year, new decade, and in part by the outpouring of support from all walks of my life, I’ve been trying to come up with a way to bring my worlds together and to be able to spend real time with people. Ways to show my appreciation and gratitude for their care.

I love to entertain and I love evenings spent enjoying food, drink, lively conversation and games. There’s a Barefoot Contessa episode where she’s in Paris and one of the expat chefs she cooks with explains that he and his wife started hosting weekly dinner parties where they welcomed strangers from their neighborhood as a way to get to meet people. I love the idea.

We actually started doing monthly summer dinners with a few neighbors last year that have been such a fun way to connect with the people around us. When I’ve mentioned this to other friends, the reaction is always one of surprise. I’ve found that quite a lot of people don’t really know their neighbors anymore, and if even they know them, they don’t socialize with them. I’ve really loved our dinners and look forward to this summer when we get back to it!

While I’ve been here contemplating things I’d like to do in the new year, not resolutions, mostly actions, my husband shared a Facebook post from a colleague who lives in New Jersey (his company welcomes people working remotely so their staff are all over the country, and a couple even outside the country). She and her husband starting hosting monthly pasta dinners when they purchased their home as way to entertain, meet new people, see existing friends, and make use of their new home. I loved it and wanted to know more about how they came to do this. Turns out they were inspired by a blog post on Serious Eats, where a couple decided to do a weekly Friday Night Meatballs dinner.

The point of the evenings is to bring people together not to impress everyone with your culinary prowess or to spend a week preparing for these evenings. It’s about keeping things simple, sharing your space and time connecting with people in your life and connecting people in your life with each other. The mix of guests can be forever changing even if the meal itself remains the same, dinner after dinner. Evenings can end up with lively games and other fun simple entertainment – impromptu karaoke anyone?

I’m dreaming of being home and figuring out how this idea can find its way into our routine. One of the greatest gifts of Cole’s spinal surgery journey has been the recognition that we have a big community of people who care about us. I really want to welcome them into our real life and implementing a regular dinner night seems like a perfect way to do just that. I can’t wait to see who will actually join us! I really hope we have a revolving mix of people open to the magic of togetherness!

It’s hard to believe that 2019 is coming to an end – not only 2019 but the decade. It’s hard not to have this past month define much of 2019, but the reality is there have been a lot of things that happened in 2019 that are to be celebrated. Perhaps looking back, our current hospital adventures will be celebrated too. At the very least, our survival of them!

One of the things I’ve worked on this past decade is to be more open to asking for and accepting help. Somewhere in the last few years I started going to a special needs moms support group, which started opening me up to exposing myself. I also have a couple of dear friends who encourage the same of me and it’s transforming my psyche. I’m definitely a work in progress and will probably always be such but learning to be open to change and vulnerability have impacted my life in more ways than just as a mom.

I’m not good at resolutions so my interest in the start of a new year doesn’t really lie in committing myself to do this or improve that. The usual things like devoting more time to wellness (fitness/healthy eating/sleeping), finding balance in life, being my best self are ongoing endeavors. A couple of years ago I challenged myself (along with a friend) to try to do new or different things throughout the year. That too is something I hope to continue to explore. I was gifted a guitar for Christmas this year so learning to play is on the agenda – I have some lofty songs I hope to eventually master! I also want to challenge myself to write more – whether it’s this blog, short stories or even letters to loved ones. The practice is cathartic and I dream of one day having something published, making the practice even more important.

I see 2020 being the start of a movement where I strive to be more present with my time, care and interest in my family, friends and others. I greatly appreciate the simple, but intimate joy, of spending time with people I care about or am interested to know better over shared meals, experiences and time. I don’t feel like I do it enough though and really want to have impromptu meals, game nights, afternoons hiking with friends. I’m at an age where life feels more fleeting. An age where both peers and parents are leaving us or are facing health challenges. Time shared is so much more valuable than any purchased gift. My perspective of this value has deepened as I’ve aged and I feel strongly about drawing my community more into my everyday life, holding them dear and near, celebrating nothing and everything.

On that note, slightly in advance, here’s to a bright 2020! I wish you all a glorious new year filled with promise, joy and love!

Today is Christmas Eve. We’ve been living at Children’s Hospital Los Angeles (CHLA) since December 4th. Cole’s surgery has been rescheduled due to a cold he caught here. If all goes well and he stays healthy for the next weeks, it will be January 6th. We thought by January 6th we’d be well into healing but have hit bumps all along the way.

Christmas Eve is Cole’s favorite holiday. For seventeen of his Christmas Eve’s, we’ve gone to my brother’s house to celebrate with our family and extended family, usually my sister-in-laws siblings, their kids and her dad an his wife. Sometimes her half siblings and their children join as well so there’s 20-24 people gathering together for a night of fun. We arrive with a non-gender grab bag gift, ready for a great night. The evening starts with cocktails and appetizers as everyone tumbles in. Lots of catching up and lively chatter.

Eventually we all take our assigned seats and the feast begins. It’s a traditional roast beef and Yorkshire pudding meal with two salad choices, two veggies, mashed potatoes, au jus, horseradish and lots of yummy wines. It does not deviate. Convivial conversation abounds as we all devour the delights. Once we’re done eating, we migrate to the living room were we all don crazy Christmas hats that my brother has collected over the years. Some are Santa hats, some silly ones, some Hanukkah ones (we’re a multi-cultural family). We then choose our day of Christmas and sing a rousing, often terrible Twelve Days of Christmas.

While we’re singing, someone sneaks out and throws on a furry, plush Santa suit and beard and appears just as the singing ends with little gifts for the younger ones. Over the years it’s been most of the adults, and more recently the eldest of the cousins. It’s silly but depending upon who is Santa that year, can be quite funny.

Following Santa’s visit, we settle back around the tables with cookies and sweet treats and take an annual holiday trivia quiz to determine the playing order for Dirty Santa. Once we set the order, the game begins. Starting from low to high, someone selects a grab bag gift. The next person can either steal (maximum of three steals per gift), or choose a wrapped grab bag gift, and so on. The coveted gifts get stolen until they can be stolen no more. Gift cards and tech gadgets are popular.

At this point it’s nearing 11:00 pm and everyone’s winding down, heading home, getting ready for Santa and the next day’s festivities. In Cole’s mind, this is the perfect night.

Sadly, this year we’re stuck at CHLA. It’s a fantastic hospital to be stuck in if you find yourself stuck in a hospital on Christmas. But nevertheless, we won’t be with the rest of our crew and one of us will wake up at home alone (me) tomorrow because only one parent can stay the night and it’s my husband’s night. We were gifted a little faux tree this morning complete with twinkle lights and few ornaments and have a festive collection of holiday stuffed animals that have been gifted to Cole by thoughtful visitors lending further to the holiday feel, though it somehow still doesn’t quite feel Christmasy.

Cole seems to fluctuate between being happy and sad when reminded it’s Christmas Eve. I think he might rather just have the next two days pass without much fanfare as we inch closer to the January 6th date. Tomorrow I’ll bring a festive bag, left by Santa, with his gifts and hopefully it will be a cheery day.

I’m sitting in an armchair with Cole sleeping next to me in 27 lbs of traction, nursing a cold. The last thing we need is a cold or illness of any sort but weeks in hospital in December are hardly the best circumstances to prevent illness! Nurses and other kids all have the same little cough that he has. Who knows where it came from – there are so many people coming in and out of the wing…So we’re doing all we can to keep it from getting worse. The surgery is scheduled for December 24th, which gives a week.

The traction process seems to be going well. Cole’s spine is responding favorably to the slow stretching and from the last x-rays his ribcage is shifting back into place. He sits so much straighter which gives us an idea of how he will sit following the surgery. It’s really positive and he says he’s more comfortable even in the traction – and how can he not be? His pelvis is straighter so he sits better and it’s also no longer touching his rib cage. With his rib cage straighter, his lungs are no longer impacted so his breathing is better and simply sitting straighter really has an impact on his overall image – he looks more mature and present.

We’re now two full weeks into this incredibly weird existence. I feel like a ghost in my life. I spend about 75% of my time at the hospital, returning home every other night to cuddle our lonely, confused dog, do a load of laundry, sleep, shower and return to the hospital the next morning. I can tell my husband has been there but we’ve not been in the house together for two weeks. We spend time at the hospital together but with Cole and visitors and nurses, aides, doctors…endless comings and goings at all hours.

It’s hard to know what to do with myself when I’m home. I’ve wrapped all of our gifts, though I’m not sure why. We do have stuff we’ll pass along to my family for their celebrations and we shipped to family out of state but what of our celebration? How do you celebrate when you know you’ll be spending Christmas Eve waiting with worry while your son undergoes a ten hour surgery with a couple of hours of pre and post op on either side of that ten hours? How do you celebrate Christmas when your son will be in the PICU on Christmas and likely Boxing Day? We’ve considered doing something before with Cole but we can only have two visitors so we can’t even do something with the just my brother and his family and my mom, who is coming down from Oregon. The reality is it doesn’t matter much to my husband and I, but it does matter to Cole, whose favorite holiday is Christmas.

None of this matters except getting him back to full health before surgery and then getting him through the surgery and the next month of recovery. We’ll have to create a new holiday after all this is but a memory so that he can celebrate his recovery, bravery, and grace that he’s shown throughout these weeks.

We’re closing our 6th day of pretty much living at Children’s Hospital LA (CHLA). Cole was admitted last Wednesday and will be here until the end of the year, maybe just into 2020. We’re surviving. Actually better than surviving. We’re getting into a routine where we’re both hanging out with Cole during the day and then one of us goes home to attempt a good night of sleep and to spend some time with Luna, our poor, needy ten year old Golden Doodle. Then it’s back to CHLA.

Cole’s days are filled with lots of nurses, doctors, residents, and various support staff popping in for vitals, to add weight to his traction, to help us with anything we need – like transferring him from the bed to the traction wheelchair for an outing or helping with other needs. He’s also had a barrage of very welcome and much appreciated visitors. At first it felt overwhelming but now that he’s more settled and doing remarkably well with the traction, the visits have been a great source of joy. For him, and for us.

It took me a long time to understand that it’s okay to ask for help, support, or care. Early into my parenting journey, I did my best to be an island. I have always been a pretty self-sufficient person and in fact often served as the maternal one amongst my pack of friends when I was single. I’m pretty good about jumping in when someone is in need and am always at the ready to help. I’m appreciative when someone recognizes that I am in need, but in the past it was hard for me to fully accept it.

Nowadays, I try to ask. I reach out to friends when I’m struggling and I have tried to build a support network so that I don’t have to go through things alone (I should clarify that my husband is the biggest part of my support and a great partner – but he’s also sometimes going through the same things as I am such as Cole’s current medical situation). I was part of a special needs mom’s group for a while, which I think is where I both realized how much I like having people in my life who understand some of the unique parts of my parenting experience, and how valuable regular sharing is to me.

I’ve learned that being an island is not what’s best for me. I like knowing that people are thinking of me and wishing my family well, particularly in high stress situations like the traction and looming spinal fusion surgery. I also really like being able to show the same support and care to my friends, near, far, and in the social media stratosphere. It’s one of the most positive aspects of social media – the strength and heart of many. I know not everyone feels this way but having gone through some of Cole’s surgeries quietly and the more recent ones more publicly, I can honestly say that the impact of sharing truly helps to quell fears, stand tall, and to make it through the long days and nights.

So keep the love coming and know that if ever you find yourself in need, I’ll be there for you.

Our lives took a very unexpected turn on Wednesday. After months of prep for Cole’s spinal fusion surgery, we checked in on the surgery day, readied ourselves for a long day of waiting and surgery only to learn that when Cole was put into traction pre-surgery (but already under effects of anesthesia), his nerve function diminished so the surgery was put on hold.

Instead he was outfitted with a halo, a barbaric looking traction crown that is basically screwed into his skull, that has a handle of sorts at the peak from which weights on a pulley are looped through to slowly stretch out his spine over the next weeks in preparation for eventual spinal fusion surgery on the 24th. Over the course of 20 days, the weight will go from five pounds to almost forty. During this process Cole will remain at CHLA and will be monitored and x-rayed to ensure that the traction is working and that his spinal cord is handling the stretch well.

Fortunately, there is a wheelchair that’s been modified with the same traction set up so Cole can move around the hospital a bit during our stay, though after three days in a single room are already taking their toll. We’re all adjusting to our new “home” and my husband and I are trying to work out reasonable schedules so that one of us is always with Cole (one parent is allowed to sleep there so we’ve been switching off nights) and one of us is working to maintain life – i.e. taking care of our dog, house, groceries, etc.). We’re both able to work remotely, though given the longevity of our stay, we’ll each likely go into our respective offices next week since there’s no real need for two of us to be in hospital all day, every day. The trick is going to be finding some balance of normalcy in this weird existence.

Following the surgery on the 24th, we’ll have another week of post-surgery recovery so we’re likely there into the New Year. Definitely not the holiday season we anticipated. We’ll just be hanging around CHLA, making the best of a challenging situation.

Cole is having spinal fusion surgery on December 4th. The surgery itself is arduous – about ten hours under and a full week of hospital recovery. He’ll have his spinal cord straighten and supported by two titanium rods from pelvis to the top of his spine when all is said and done. It’s not an uncommon surgery for people with cerebral palsy, who are largely wheelchair bound. Over the course of his eighteen years, Cole’s spine has very slowly curved more and more, until the past year and half where it exponentially grew more severe seemingly with the onset of puberty. The right side of his pelvis is nearly touching his right side rib cage.

As much as I loathe the idea of putting him through another long surgery and painful recovery, the implications of the scoliosis worsening are far more concerning. It can have a significant impact on his overall health, including breathing (his seems to be a little compromised already) and heart issues. Plus he’s likely been living with a fair amount of discomfort for a while.

I know other families who have been through the surgery and ultimately, no one has yet to regret doing it and the benefits have been truly impactful in terms of improved quality of life for their children. So it’s an incredibly difficult no brainer. From our previous experiences with major surgeries, I know that once Cole has mostly recovered and resumes his regular routine that the much of the hellish procedure and recovery will quickly become a distant memory. Cole’s very resilient in this respect, which makes us the same.

Several years ago when Cole spent a summer recovering from a huge hip surgery that left him bedridden for two months, I put out a challenge of sorts on Facebook to all of my FB Friends whereby if someone sent Cole a card, note, joke, movie recommendation, really any sort of mail, he would write back – and he did write back to about 150 people all over the world. It was amazing and it was the best diversion during recovery and extended our support network exponentially.

Christmas is Cole’s favorite holiday. Our traditional Christmas Eve event at my brother’s house is literally his favorite day of the year and his most favorite evening. He also loves holiday music to such a degree that I’ve had to limit the listening window to start at Thanksgiving and run up to New Year’s Eve. He loves sending holiday cards. So my thought for his recovery this time is to challenge everyone to send Cole a holiday card and he’ll send one back. It will make him so happy and hopefully help ease the post-surgical pain, discomfort and boredom.

Thanksgiving has become a holiday where we, my pod of three, frequently find ourselves trying to figure out how and with whom we’ll celebrate. For a number of years we joined extended family for a chaotic feast, but it wound up not being quite right so we hosted a couple of dinners ourselves, inviting other families and friends who were similarly without plans. We’ve been invited to share with the clan of a close friend several times, a dinner that was always warm, festive, and full of great conversation and cheer. The clan has since grown considerably so the dinner is now relegated to clan only, which seems right. Last year we again hosted with a couple of families, one of which was transitioning via a divorce and in need of a new experience to help get through the holidays. And this year, we’ll be sharing with them and their extended family as guests – though they’re as close to us as family comes – in what may be their new tradition.

Thanksgiving is likely my favorite holiday when it’s well celebrated. It’s a time of year where we tend to reflect on things that are important and where the best part of the festivities is simply spending quality time with those we hold dear, sharing a glorious meal, laughter, gratitude, and care. The celebration can languish over wine and conversation, or move to game playing like our dinner last year, leaving bellies full and souls sated. In my mind, it’s the perfect dinner party…

This year particularly I’m counting my blessings as we are all gearing up for Cole’s surgery next week. My nerves are right at the surface, so I’ll be spending some of the long weekend preparing the house and freezer for our week at the hospital, and then those first few days home when we’re getting our bearings in terms of caring for Cole and his new back. We work well once we figure out the best routine so I know it will get easier as we settle home.

I plan to decorate Cole’s room with heaps of holiday decorations so it feels festive and Christmasy. It’s likely he’s going to miss his favorite holiday celebration, Christmas Eve dinner at his uncle’s house. The two share a love of Christmas and my brother puts on a wonderful Christmas Eve celebration every year that Cole looks forward to and adores more than anything in the world. I want to transform his room into a winter wonderland while he’s still in hospital. It breaks my heart that he’ll miss it this year so I feel compelled to create some new holiday cheer for him to make up for it just a little.

I’m grateful to have a tribe of friends and family who will be around to support Cole, Dan and I through this.

Happy Thanksgiving to you and yours! I hope you’re festivities are full of love and joy!

A friend recently told me about a study that concluded that the chronic stress special needs parents experience is akin to the stress experienced by combat soldiers. It’s a shocking comparison but the reality of the continued level of care of a special needs child adds complexities to the lives of the parents for their rest of our lives. I get it. My son is eighteen now. Nothing about his care has changed in terms of his needs except I’m now eighteen years older and he’s a lot taller and heavier.

While we strive to provide him with as much independence as possible, and with a rich life outside of home and school, it doesn’t come easy. As parents of special needs children know, nothing about our children is easy. We fight for adequate, affordable medical care, inclusive education opportunities (for which we have annual IEPs that require a lot of prep and determination to ensure that our child’s rights are protected, his needs met, etc.), we work hard to maintain friendships and social opportunities, we bathe, dress, transport, transition, entertain, feed, tend to personal needs, fight bureaucracy and support our children in every way imaginable. We do it with love and care because we love and are dedicated to our children.

The considerations that go into planning anything (restaurants, friend’s houses, travel, long outings) is daunting. You don’t just jump in the car and go (and you can’t send him off in someone else’s car because you need a wheelchair accessible van). You need to ensure that your destination is wheelchair accessible, that you have access to reasonable bathroom accommodations for changes, that your friend’s house doesn’t have a steep drive way with multi level floors or steps leading up to the house, that the restaurant can accommodate a wheelchair, and more.

I also recognize how fortunate I am to have a partner who shares all of the parenting demands. He’s highly involved and supportive of both Cole and me. Not all families have the luxury of two able bodied, loving, involved parents.

But it isn’t easy and there’s rarely a break. Our kids needs don’t change as they age. While typical peers are walking, talking, dressing themselves, making friends, feeding themselves, showering, toileting, going to school, learning to drive, going out with friends, attending concerts or movies or dating, we are still taking care of our kids. When typical peers are heading to college and moving out on their own, we are still taking care of our kids needs. We’re just a lot older, which makes some of it harder.

The physical nature of caring for a child like mine is that it puts a lot of stress on your body, especially as it ages, between the transfers, transitions, lifting (my son, thankfully, is small – just around 80 pounds), and the eighteen years of interrupted (and sometimes complete lack of) sleep. There’s no one else who is going be there, so you just do whatever needs to be done, no matter what state you are in.

A lot of us have kids with medical issues on top of everything else, so when my son exhibits some reflux occasionally, I begin to worry that his Crohn’s Disease is acting up, and when he’s scheduled to have a major surgery that has significant risks and requires a lot of juggling to get pre-op appointments and insurance issues lines up, there’s stress. When he comes home wet from a leaky g-tube, is there blockage, does he need a replacement, or incompetence? There’s also financial stress in that therapies, equipment, supplies and medical treatments, medications and procedures all come at a cost. And more stress.

My husband and I both work full time as well so there’s the added pressure of ensuring that work doesn’t drop and that we maintain good standing at our respective jobs. We are fortunate in that we both work for companies that have flex time and where we can work remotely if needed, like from the hospital while our son is recovering from a surgery for a week. We are fortunate that we have insurance, even if it’s not always easy to access certain benefits.

We don’t have family around who can physically help with childcare. We have found a couple of people who work really well with Cole and who, when available, are happy to spend time with him and to support us as well. Of course, at a big financial cost.

The idea of any kind of balance in your life when you have a 24/7 child and work full time is laughable. There’s not a lot of “me” or “us” time in your days – ever. The notion of self-care is just that – a notion – not a reality. As vital as self-care is, it’s just not something finds its way into daily routines with ease or consistency.

It’s hard to maintain friendships but I strive to do so because my friends are my sanity and lifeline. Without regular girl’s night outs, I’d lose my mind. The conversations, laughter and love feed my soul. It’s also hard to keep a marriage healthy when, as a couple, we have virtually no home time alone and rely on occasional date nights for some much-needed adult time. At this stage in life, having your social life still dictated by childcare availability is stressful and simply requiring childcare adds an additional cost to going out. Childcare often ends up costing more than the actual date. But no going out alone sometimes is not an option. It nourishes us and gives us much needed time together. It’s not a luxury. It’s a necessity.

Following the conversation about the stress comparison, I had what became a heated conversation with someone close to me who I thought had a sense of what my life is like and understood the pressures I live with and the total long term impact and worry exists in my life. Was I ever wrong. Instead of compassion about my concerns regarding the upcoming surgery and particularly how hard the recovery will be for Cole and us, I was admonished for getting upset and raising my voice. My heart broke.

While I don’t need or want recognition or accolades for doing what any parent would do in the same circumstances, a little understanding and care goes a long way. I love my son to the core, and I love being his mom. Nothing is more important to me than him being happy and living a life that is rich, full of experience, love and joy. But in that existence, we as parents, also need to have our own little bits of pleasure, peace, and ourselves. Without it we would implode.

Twenty something years of being together and I’m realizing that my husband and I have some serious communication issues. Instead of developing a shorthand, instinctual and deeper sense of understanding one another, as couples are apt to do after being together for so long, we seem to be doing the opposite and it’s causing hurt, frustration and distance.

He thinks I treat him disrespectfully, with responses that are mostly piss and vinegar. I think he takes things too personally. My being frustrated when I get home from a long day at work, spend three of those hours in stop and go traffic each day, needing just a few minutes of down time to transition to being home and taking a breath, is not a sign that I’m not happy to see him or that I see him as the cause of my angst. I’m simply not always able to burst through the door, offering smiles and kisses the second I get out of the car. It’s absolutely nothing personal.

I’m not always kind. I know this of myself and I’m not proud of it. I work hard to try to be better but I think the unfortunate nature of marriage or relationships is that we have a tendency to take things out on the people closest to us. Part of that is simply proximity. Part of it is a sense of trust – people we love can see us at our worst and still love us. Part of that is a belief – however wrong it may be – that they know they’re not the root of the anger and frustration just the dumping ground. I’ve come to understand that these theories are not actually true. Particularly in the case of my relationship, the latter.

I’m not sure how one goes about changing patterns and habits that are well established from childhood. I suppose the fact that I can admit to or have awareness of my behaviors is the first step, though I struggle to get past that one step. I also feel like I can’t be the only one stepping. I can take responsibility for my words and my actions but I cannot influence how they are heard or taken. I can’t change someone’s expectation or anticipation of my presence.

The nature of our communication is stunted in some ways because we are almost never together without Cole present as well. it’s hard to have adult conversation, or even complete conversations about anything without him being there and often not pleased about us talking to one another or the feeling that a particular conversation may not be best had in front of him (like discussing our concerns about his upcoming surgery or my husband’s travels or a night out). It’s not natural and we rarely pick any of those conversations back up because we’re almost never alone, just the two of us in a room when we can have real conversations.

Anyone else have communication issues? Any thoughts on how to improve things?

I recently heard about a colleague’s attempt to do so by having a night a week where she and her husband turn off electronics and spend the evening playing a game and talking, be it cards, Yahtzee, or whatever. She says it’s done wonders in terms of them appreciating one another more…A fun idea that sounds worth the try!